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  • Mom’s Trigeminal Neuralgia

    Posted on January 7, 2016 by in Mom's Pain Journey

    If anyone is seeing this and doesn’t know what#trigeminalneuralgia is, it’s the worst pain known to man. 52% of patients with it take their lives in 2 years. Atypical Trigeminal Neuralgia is what my mom has. That means the blood vessel is not pressing on the cranial nerve that serves the face.  I moved her into in 2013 when after 20 years of the condition, she was to sedated from medication she would end up in the ER because she was fall trying to get out of bed. She was in pain for several months after arriving. The neurologist tried a drug she didn’t think would work but was grasping for straws. I did work for about a year then stopped. Now she is in more meds but winter of 2015 she started having the “strikes” and since even a breeze would set off a full-blown spasm, eating became a trigger. I notice she was avoiding eating and was loosing weight. The pain seems to come on in the winter. By Feb. I suggested she get a feeding tube. She didn’t want to so I kind of threw my hands up and gave up though frustrated with her. Well, she had to think about, turns out. She came in a couple of hours later and said she would go get it. I took her to the ER because waiting to for getting into the doctor and set up the procedure was going to take to long. She didn’t have that kind of time. I got them to admit her for the feeding tube.  When summer hit, she had less issues and even was able to eat by mouth a little. Then when we had a freeze, the pain started up again. You might think circulation is less in the winter and that may have something to do with it. She was able to exercise at the Sr. Center even doing light weights. She is hates the cold and probably tenses up make circulation less. Now, the weather is wet with some mold indicators showing on the weather websites.  By the way, this is painful for me to see her go through this. I realized my brother and I have had an awareness of her pain for a long time but not 20 years. She has kept it from us very well. Now living with it, it’s very sad especially since it looks like everything has been tried. I tried to get the weatherman on the phone to help me understand what is going on that could effect nerves and muscles in the winter. Never could reach them.

    One day a suggestion was made by a Shaklee Distributor to try Pain Relief Complex and Joint and Muscle Pain Cream.  This was on Facebook.  I thought they had know idea of this condition. One Sunday on the way to church she started having sensation or “threats” of an attack. I got her home and she almost fainted. Blood pressure was very low. Thought I was going to have to take her to the ER. She did to, which was unusual.  She said her head felt like it was on fire. This had never happened.  She decided to lay down and sleep. I did a soft tissue calming technique to see if it would help. Don’t know if it did. She slept then woke up and was setting in the chair when I got home.  I thought why not try the pain cream. Had her put in on her cheek. She didn’t have pain for 4 days.  We tried the Pain Relief Complex before but the amount was probably not enough. I tried it yesterday since she has been in and out of pain the last month. I couldn’t crush it fine enough to get it through the tube without clogging up. It might work at a higher dose since she has #atypicaltrigeminalneuralgia because it is a #naturalanti-inflammatory. It seemed to work on my pulled groin pain. You might try it vs. Advil and other pain meds that are hard on the kidneys. Pain Relief Complex

    I started offering the Shaklee products and depend on the income from that to stay with mom at home. Otherwise, she would have to go to a facility. Who can do that to their parents?

    Back when I first moved her here, I looked up what people were using. Found Xylocaine spray and got it from a Canadian pharmacy.  It seems to stop the acute attacks.  She is resting. Fell asleep because the pain is exhausting. People have know idea and I found out even some family members of those who have this ruthless condition don’t believe it’s real. They think they want attention.  Maybe they should have TN for a day and that will shut them up.  How cruel it is for family to not be compassionate. It’s unthinkable to me.   So I set here with her knowing I need to earn an income and have lots to do but feel frozen. Mom’s Trigeminal Neuralgia #pain is all consuming.